Absolute misery this weekend

[DKL1]

Hello.  A new poster here with my recent experience with glutin 'poisoning'.

I'm a 64 yo male that has enjoyed a relatively healthy life and perhaps a result of seeing my maternal grandmother and my mom being very health conscious throughout my life.  As I got into my 40's and 50's I began 'listening' to my body for signals that maybe all is not well.  My wife (7 years younger) has been a person that will spend literally hours researching digestive issues and head ache (migraine) as she is prone to both.  A keto diet has been her journey for a few years and I decided to jump aboard a little over a year ago.  Not that I'm that heavy but my weight came off rapidly, my arthritic joints became pain-free, and overall I started feeling better than I have in years - and I didn't realize how much better I could feel.

Now I have to admit, I fall off the wagon from time to time simply because I have no self control!  Example: we might go out to dinner and I'll say "oh I'll have a beer..." bc I haven't had one in a couple weeks.  Or we'll go to a place that has this great bread they bring before the meal and I'll eat one piece or such.  

Well... Last Friday we went to one of our favorite wings places and I ordered up a big tall (20 or 22 oz) draught IPA.  To add insult to (impending) injury, I ordered a big ol' juicy burger ON A BUN and I ate it (the bun).  I had no idea how much misery I was setting myself up for 24 hrs later.  Saturday evening I started getting some discomfort in my abdomen and by Sunday afternoon and especially through the night on Sunday, I was in writhing pain in my intestines.  I MIGHT have slept an hour all night.

Monday morning I had to do something.  I had no idea if I was having a gall bladder attack, appendix explosion, or what so I went to see my GP doc.  Now he knows that if I come to see him that I must be in some acute condition bc we've had the conversations about why I should be coming in regularly for all the screenings for this or that and he's not happy with me that I don't feel the need to do so.  So, yesterday he would have sent me directly to the ER if I would have gone bc I've never had a colonoscopy - which he is just livid - and he thought that there they could do all the requisite tests and perhaps find what is the root of this acute pain.  I told him of my diet I have been eating and that I have been mostly glutin-free for some time and that I had eaten a pretty heavy dose of it on Friday.  He basically poo-pooed that idea as even being a possibility.  He gave me a strong recommendation that if tomorrow (which is today) that the pain is still there, and definitely if it worsens, GET TO THE ER.

I'm here to report, I am convinced that is EXACTLY what happened, I had a glutin explosion in my gut that took me out for roughly 24-36 hours.  I am feeling MUCH better at this moment and believe I'll be my 'normal' self by end of today!

Dale

[Awol cast iron stomach]

Hi Dale,

Welcome

It is possible based on what you shared you may have had a gluten reaction. 

Did your joint pain return as well as the gi pain?

Is this your regular physician? If he is sending you for colonoscopy it maybe worth telling the gi Dr about your gluten NCGS or celiac concerns.

The colonoscopy will not see small intestine damage that requires a endoscopy. 3 years ago they gave me both scopes, but prior to that I only had a colonoscopy. My colonoscopy was ordered in my early 30s due to another relatives health issue not celiac. I was missed at different intervals with a variety of symptoms in my early 20s, 28, 30, 32, and 38. I only became official in medical records 3 years ago at 42.

  If the gi wants to pursue celiac testing often they will want you on gluten for 12 weeks. Occasionally a gi will do a 2 week gluten challenge with an endoscopy, but the 12 week challenge is the norm.

Unfortunately I was misdiagnosed and missed for quite a long time. My cousin is also a celiac and was missed until her 30s. She was diagnosed before me. We also present symptoms differently.

So if you feel this maybe your issue you need to ( despite your other Dr poo poo ing your concern) let the gi know.

Best wishes 

Good luck 

[GFinDC]

Hi Dale,

Welcome to the forum! :)

Your symptoms could be caused by celiac disease.   Celiac disease can affect every system in the body.  The reduction in symptoms when gluten-free and resumption of symptoms on gluten exposure is very telling.  Unfortunately the actual diagnosis process does involve eating gluten to enable accurate testing.  Celiac disease is an auto-immune disorder.  In celiac the immune system creates antibodies that attack some part of the body,.  Sometimes the attacked body system is the gut (small intestine) but other times it is the skin or some other body organ(s).

When we go gluten-free the immune attack slowly subsides because the body reduces and then  stops making gluten antibodies.  Those antibodies are the primary thing they run tests to find evidence of celiac disease.  So the standard testing requires eating gluten for 12 weeks to be sure there are enough antibodies to detect in the blood stream.  Two to 4 weeks for the endoscopy.

If you've never had a colonoscopy or endoscopy, don't worry.  They are easy as usually the patient is sedated.  However, you may not be able to complete the gluten challenge due to your symptoms.  In that case, it may be better to just stay gluten-free and live as a celiac from now on.  There are not any great treatments for celiac disease right now, so a diagnosis is of limited value.

There is also a  gene test they can do which doesn't require you to be eating gluten.  However it only shows if you have the genetic possibility to become celiac, not that you are celiac.   About 30% of people have one of the genes, but only 1% become celiac.

Lots of doctors are unfamiliar with celiac disease and testing for it.  So it can be helpful to search for a celiac aware doctor in your area.  Sometimes there are celiac disease support groups in an area that can recommend a doctor.  We also have a  thread with doctor ideas for various states.  Usually a gastroenterologist is the specialist doctor for celiac testing.